Wednesday, February 25, 2009

Be My Brother

We have a wonderful Tropfest - short film festival each year. This year's winner will definitley appeal to you - I promise - it's funny and lovely in so many ways. Check it out - at 7 minutes you can watch it (I think) via the link in this title. It's called Be My Brother - and I think it's great! Here is another link that should go straight to the film:

Friday, February 20, 2009

Whoo Hoo - Travelling Afghan - go for it!!!!!!!!!!!

Check out the link in the title. I'm in - are you?

Rainbow Club and other good things

Life is good in the dock. Dad is living with us for a couple of months - he is down here for work. Preschool is Great! I love the teacher - Hannah's social insecurities haven't been magically overcome but she has a fantastic teacher and teacher's aide who are open to seeing what she can do, give her space and want to see her happy and also think about what her indivvidual needs might be - I am very happy with that. I think in the world of mainstream with a lack of funding that is the perfect scenario available to us in the world of NSW ed.

After over a year Hannah is off the waiting list for Rainbow club and in the pool - see Title link for more details. When I heard I was already planning the chats and gossip with the other special needs parents - rang DH about it - appears that he is keena d willing to go ... so I get to stay at home with Kit for that one.

Have booked us tickets to the Wiggles Go Bananas show at the Enmore - also have a letter crying - child with disability - ready to post - fingers crossed Han gets to meet and greet the band - she would be in heaven (and I'd get a new outfit)!!!!

Han loves the idea of 'school' - at the moment we refer to her EI class as 'school' and then she and Kit go to preschool. At stroytime and before EI she often brings out ehr book Dora goes to School to read. She loves the idea of school. I hope she always does.

I have finally bitten the bullet. Given the increase in fees but reduction of services at Han's EI - I have organised for a private ST. That is going really well. Han is in love with the computer at the moment although the concept of what your finger does on the laptop mousepad having anything to do with the icons on the screen is a challenging one for a little girl! I hope to make some powerpoints of her favourite story books to use to help encourage her speech.

Tonight we had local friends for dinner - their 6 year old was great - played well with the twins and seemed to have fun. So did the grown ups. The rain has finally cleared so here's to a sunny weekend down under!

Thursday, February 12, 2009

Party Games and the Dancing Girl

Hannah loves to dance and party games!! The Hokey Pokey is her current favourite. I have instituted the no tv on the mornings before preschool - she has taken it in her stride and instead puts on a cd and has a boogie. I have the ongoing fear that she doesn't really have nay peers that she sees as a special friend. I don't know whether it is because she is naturally a bit of a loner or if she doesn't know how to 'break in' with kids her own age. At least I know that she is happy playing on her own and if someone wants to organise a musical game - she is there - front and centre.

Wednesday, February 11, 2009

Life is Precious

As Tommy's mum has pointed out - life is indeed precious - and people are just amazing. I hope and pray that the bushfires in Vic get under control soon - and the death toll doesn't go any higher. While fire rages at the bottom of this country the town of Ingham is under water. At least the death toll there is nothing like Vics. I am sure there are plenty of 'everyday heroes' there too though. SO life is precious and people really can be absolutely amazing. Have a good day, hug a friend and smile at a stranger - it's worth it.

There is a link in the title to a photo gallery of the fires - terrifying.

Tuesday, February 10, 2009

Worlds of Possibilities

The ever fantastic Jennifer of Pinwheels had a link to Bridget's Lights who quoted this wonderful piece from Candee Baswell - indeed a world of possibilities is what 'special needs' people, their family and friends need to keep in sight. A post I need to revisit as I begin the formal schooling prep for Hannah - yep - I have to get my act together and organise an IQ test for her sometime before mid year... The world of measurement may have it's place but it is only one view and it is certainly NOT the sum of a human being.

Kit had his first general anesthetic today - dental work poor darling. I went to bed last night feeling sick to my stomach. I just never seem to get better at this. He is pale but sleeping soundly. I hope God and all those wonderful women I know who have died are keeping a close eye on my little love tonight.

Monday, February 02, 2009

On a brighter note...

Sorry for the maudlin self indulgence. I really needed to vent some of those intense emotions. I am feeling much better now although very tired. Little brat has had a good day and whatever occurred on Sat seems to have passed (I hope!). The brats had a great time at preschool and I am REALLY happy with the start they have both had there.

Sunday, February 01, 2009


Hannah has been sick.

On Friday I took the twins to get their 4 year old immunisation shots. Hannah was a barrel of laughs and I am sure her GP was impressed with her general adorableness. Sat morning ... she came into our room just after 7 and says "Mummy" and runs back to her room. I can hear her but I don't know whether she is sobbing or about to throw up - I go in to check. We lie together on her bed in the dark - the sounds continue as we cuddle and I know I have to take her into my room where it is light to get the second opinion of her father - she is not well.

My heart sinks. I've been here before - but not for a while.

She is ghostly white - DH goes into control mode. he's holding and talking with her. Totally focussed on her - barking out orders "Apple Juice" to me, terrified watching and hovering. We carry her out to the lounge - he props her up as I pour juice into her sippy cup. Hannah's eyes roll back, her arms are bent and they jerk, her legs are bent and they kick. She is lost. We are terrified - such a pitiful word for our hearts clenched. Our breaths held. It's only a couple of seconds, it could be years. She's so tired. She flops. Her father coaxes her - "What is Hannah doing today?" "Bikeriding" he says with so much more conviction than he could possibly be feeling. We love you so much little bear. Our hearts are breaking...

I fumble, struggling to recall what I used to do - ring the GP - he's closed - his after hours number is a Catholic school (is that a message?), scrambling along the side of the fridge - eureka! it's there, coming back to me now - Westmead children's hospital's helpline. YAY!!!!!!!!!!!!! I ring - we go through it all, I give our details, I describe a few times what happened. She draws a picture from my inadequate words. Take her to a hospital. "I shouldn't just wait until her GP opens at 9?" "No."

Oh My GOD!!!! We are all in or pj's. She is sitting up - talking about bikeriding with her father - WHY is he going on about that - as if she is going anywhere but hospital at this moment????? She smiles and is reassured - yep, bikeriding and the park today for Hannah.

We ring the grandparents, half asleep but ready. It's taking so long - should we call an ambulance?? She is not sitting up on her own anymore but lying on my bed watching me trying to find something to wear. Something that says "good mother" , caring and kind - a middle class trakkie dak for a hospital stay. Kit is bundled into the car and dropped at Nan and Pop's house. No time for chit chat. We are off.

I sit beside her in the car. I love you, I say. Crying. DH drops us off at the entrance and goes to park the car.

Triage nurse asks the usual questions. I sit there. Calmer now we are in a safe place where surely my dearest daughter's safety is finally someone else's concern. Someone else can 'deal' with her and give her back to me as she was before. Eventually she asks what happened and why we are here - after the particulars of age and name and address are dealt with. Thank goodness - now we are down to business. Do I tell her now? Is it clear enough to her that this information makes no difference to us right now but is offered purely to help her in the art of diagnosis? Is it obvious before we say anything? Are we treating her like an idiot? I don't know but I feel it needs to be said "Well, she is usually a bit floppy anyway, she has DS, but was really floppy after the convulsions." The subtext the whole time as we stroke and fondle her is "Isn't she just the most precious thing you've ever seen in this hospital that deals with kids day in and day out?" Fancy us being so lucky as to get her in life's lottery?

In we go through the doors I have been before - the first time was just after Hannah's heart surgery - she was safely ensconsed in the 'heart ward' after finally being released from PICU. We were there with the other. My strong, brave Kit. I remember everything. The drs faces. We are taken to a bed diagnolly opposite to where we were taken that day over 3 years ago when a screaming, feverish Kit was given a diagnosis of meningitis. Since then we have been there for dehydration but that is all. Now we sit with our precious bundle. A nurse comes in. She is friendly and seems to have had some training in the irregular. "I wouldn't have known if I hadn't read it in her notes." she says. We've heard it before of course. So what? We smile and nod, yes we have heard that before. Why once there was a doctor who asked us if we had had her diagnosed... she definitely does... We talk about their first three months - our warrier stripes, demanding her sympathy, respect, care and understanding - these are our precious twins and they shall NOT be trifled with. We are veterans.

We tell the doctor when she comes with her gentle manner what happened. She asks us a few times - so as to get our stories right. I don't mind. I just want to emphasise how important Hannah is. Can't she see how special this child is???????? She sees the lethargy but seems to underestimate it. Later when Hannah has had a sleep and is carreering down the halls of the emergency and the desk nurse at her station is so eager and quick to ask whether this patient couldn't go and have lunch with her father (who is chasing her at the time!) I take the chance to say to the dr - see - this is what I meant - she was not her usual dollard self this morning - this is the spirited little minx we know and love ...Can't you help her? Isn't she gorgeous?

Before those moments though there is the lethargy. In the extreme. There is sleep, with twitching. There is a dr trying to find a vein for a blood test. Han gets hysterical. She is tired and not herself. She vomits. Her father steps in and tries desperately to be 'in control'. His precious daughter. He soothes her and holds her steady. I sidle to the corner where my handbag is for a hanky to surrupticiously wipe my tears. In that canula I see my dying mother, my dying 3 month old daughter and then her twin with his meningitis. I hold back the tears as best I can.

She sleeps. Wakes well. We watch the dramas, the love unfold around us until we are able to go. I have my instructions. Letters for her pediatrician and her GP. Life doesn't return to normal however. Not yet. It nearly does today. And then the phone rings.

Da Vida rings - a dr. He asks how Hannah is going. She's great I say. She has been happily playing with her friends all day and now she is building with her lego. That's good he says in a surprised voice. The culture of blood we are growing indicates a bacterial infection - staf lococi - it must be a skin contamination in the sample. Yes - we talk a bit more. If she has a fever - yes I will bring her straight back in. I go to bed and cry. I am overwhelmed. I love her too much.

I recall a drive home 5 years ago. I was trying to explain to my loving and caring DH why it was that not having children was like for me. I came up with something like - it is the centre of how I see myself, of who I am. If I am not a mother, who am I? - it was clear that if chilsren were not going to be part of our life together that I would needed counselling. DH in his love and compassion tried to understand but it wasn't until the twins were born that he would totally get it. He said so.

Last night as I cried myself to sleep, I thought of this. Kit's writing. His world. It hangs above my pillow, a gift for me. Hannah, Kit, Mum, Dad. Tonight, at story time, Hannah repeated it too. If we are their world, then then they too are ours.

Tomorrow is my first day back at work after the long summer holidays. I can't not turn up. I am so blessed with fantastic friends. One offered today to look after Han if need be on Monday. So after dinner tonight I rang her. I reached out to her. Please. I'd love it. I trust you with my most precious and vulnerable - I don't even have ot say it really she knows. Childcare is lovely but I want someone who loves just her for the day - who will run their hand across her brow regularly to see if there is a fever. Who will call us straight away and who knows that in our great love and our great fear - we will then step in. Privileged to be her parents. Forever grateful. As DH said tonight - the only thing he regrets is this. The fear of losing her. I guess he meant before the course of her natural life. The fear of her being sick. It is the shadow that haunts us.